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The Storming Bohemian Punks The Muse: 2021 Edition #16 – ‘Able Was I Till I Got Disabilitied’

A few months ago, I developed sciatica. A cortisone injection didn’t help. Nor did physical therapy. At one point I was almost incapable of dressing myself. Fortunately, the acute pain subsided, but that wasn’t the end of it.

I still can’t walk or stand for more than 15 minutes without developing pain. Sometimes, going for a walk in the park or even fixing a meal in the kitchen, I am biting my lip against it, whimpering a bit as my eyes tear.

Prescriptions produced unwanted side effects. So I asked my doctor to prescribe a second cortisone injection.

And the shit hit the fan.

I was flatly refused an appointment because I didn’t have a friend available who would drive me to and from the clinic, waiting up to two hours while I received my treatment. I was told it would be against policy for a friend to simply drop me off and pick me up. And a public bus, taxi cab, LYFT or UBER would all be unacceptable. A medical transport service would charge me in the range of $200, which would not be covered by my insurance.

My complaints were met with a shrug. “There’s really nothing we can do.” When I asked if I could speak to a patient advocate, they said they didn’t know what I was talking about. One staffer told me, “I’ll have the office manager call you back tomorrow,” but I never received a call.

Never before have I encountered contempt when seeking medical care.

My father was a pediatrician; adequate insurance and the best of care for his children was never an issue. As an adult, there was always medical insurance or family help. When I’ve had jobs (by no means a steady situation), insurance has served me well.

Mental health care is another matter; I dealt over the years with a long succession of quacks before eventually finding an ethical and effective therapist.

I thought I would always be able. I feared, but never fully imagined, my own death or chronic illness. I felt immortal and lived in denial, unable to imagine the effects of age or illness or unemployment or homelessness. I thought I was Superman. I lived in a dream.

When my friends told me tales of medical malfeasance, or their inability to manage government bureaucracies, I would always think to myself: “I will never have such problems. I am educated. I am patient. I am articulate. I can handle bureaucracies. It is always simply a matter of going through the steps, explaining myself well, and following the rules. The systems are in place. I’ll be alright.”

Nothing in my experience, until COVID, ever disillusioned me.

I suspect that many relatively insulated persons will be facing a similar awakening and reckoning in the months and years to follow the disaster of 2020.

Privilege can be a subtle thing. I have been poor most of my life, as a result of joblessness, alcoholism, and incompetent management of my affairs—all of which were secondary to psychiatric difficulties and my parents’ failure to provide for my needs, effectively abandoning me as a teenager.

At the time, I suppose it seemed to them that I was the problem—the “runaway” child—but a minor is a minor is a minor. Listen,  if your child is a runaway, there are reasons for that, and appropriate intervention is the parents’ responsibility.

But that’s a discussion for another essay.

Given that lack of resources and abandonment, I never felt privileged. But my privilege manifested in this way: No matter how bad things got, I never thought I wouldn’t somehow manage. When it came to falling through the cracks, I had been raised to believe that “this doesn’t happen to people like me.”

It is only in retrospect that I understand what “people like me” meant: “white,” “middle class,” “educated,” “protected”—all synonyms for “privileged.”

This blithe expectation of safety—even when it isn’t entirely based in reality—is one of the most insidious manifestations of privilege: it tends to be a self-fulfilling prophecy, and always taken for granted. The down side, though, is that it also carries the assumption that “people like me” are never abandoned, abused, alcoholic, disabled or traumatized—so the denial of reality can run very deep.

But eventually, the privileged may get their comeuppance when systems fail. And, sadly, it is all too easy to conclude that the failure is due to some sort of “outside” influence: an influx of immigrants or minorities or too many “freeloaders.” It’s wrong, but there are bad players out there who are all too ready to spew such hateful propaganda and it works too well too often. Fear is blinding.

Not everybody who has known privilege will make this mistake: people do become “woke” as a result of life experience and education and personal and family histories. But it isn’t easy and it isn’t universal.

No doubt, some will read this and respond, quite simply: “DUH – you’re just figuring this out now?”

Well, no. I read, I listen, I reflect, and these are not new ideas. But intellectual understanding and agreement is not the same as gut-level experience. There is always more to uncover, for all of us. Nobody gets to the bottom of it.

We have some challenging work ahead, to build alternative social contracts, keep community alive, and not default to the fascists who are more than ready to pounce.

Indeed, they are pouncing already.